Reconciling California’s history with access to care

Two years ago, YoloCares was awarded a grant from the Yocha Dehe Wintun Nation to research, explore, and address the barriers to care for indigenous and rural populations. This undertaking, named The Life Transitions Project, resulted in hundreds of hours devoted to outreach, focus groups, workshops, surveys, research, and the development of a local advisory board. The findings have ranged from obvious to unexpected …?and even tragic.

One of the unexpected and most heartbreaking discoveries is tied to a historic invisibility and silencing of a people, their culture and their needs. This issue of invisibility was seeded by California’s systematic slaughter of Native Americans throughout the 1800s. Benjamin Madley, UCLA professor and historian of Native America, estimates that between 9,000 and 16,000 Indigenous Californians were killed by vigilantes, state militiamen and federal soldiers between 1846 and 1873.

The killings have been referred to as an organized destruction of the State’s largely peaceful indigenous peoples.?The accounts have been documented in Madley’s first book,?“An American Genocide,”?published by Yale University Press.

Just 90 miles from Davis, in Lake County, the United States Army participated in the 1849 mass killing of 800 members of the Pomo tribe on land now known as Bloody Island. Capitol Hill was complicit in the Bloody Island massacre and in many other mass killings throughout the goldfields of the Sierra Nevada. At the time, California’s head of Indian Affairs reported, “The killing of Indians is a daily occurrence. If some means be not speedily devised, by which the unauthorized expeditions that are constantly out in search of them can be restrained, they will soon be exterminated.”

Beliefs tied to racial superiority were used to justify the killing; greed fueled a sense of urgency. Just two years after the discovery of gold, California became a state in 1850 …?the decade when the slaughter of indigenous people reached a pinnacle. Many of the goldfields lay in the ancestral lands of tribes.

It was a widely held belief in 19th century California that all Native Americans needed to be exterminated. According to a San Francisco newspaper, “Whites are becoming impressed with the belief that it will be absolutely necessary to exterminate the savages before they can labor much longer in the gold mines with security.” In exchange for 2,000 Indian scalps, one of the killers sent a bill to California for $11,143. The state paid it nearly in full. California spent $1.5 million on 24 different Indian-killing militia campaigns between 1850 and 1861.?Congress paid the state back all but $200,000.

A young Pomo girl who survived the Bloody Island massacre said she escaped certain death by hiding below the surface of Clear Lake and using the reeds that grow along the shore as breathing tubes. When she surfaced, she saw that her entire family had been killed. Survivors of these brutal events quickly learned that future survival would mean keeping a low profile or becoming completely invisible.

For many, this notion of staying quiet, removed and obscure has been passed on from generation to generation. There is a deep and understandable sense of distrust that has existed for nearly two centuries. This unrecognized and unresolved history has morphed into barriers that keep some Native American families from accessing care from what are perceived as predominantly white healthcare systems and organizations.

According to Aliya Patel and Brandy Jones, the YoloCares research coordinators managing the Life Transitions Project, “There can be a reluctance to accepting community-based support and a wariness of strangers coming into the home to provide care.”

Patel said the project’s findings have also made clear that providing culturally sensitive care to Native American families is not a one-size-fits-all proposition.?Traditions and experiences vary widely across tribes, throughout families and within and across regions.?Individuals may subscribe to all, some, or none of these beliefs and values.

Other findings:

• Beliefs about death are sacred and personal, involving different customs, traditions, and religions.?While many Americans perceive death as something to be avoided and a final end, many Native American families view death as a natural occurrence within life …?something to be accepted rather than feared. Rather than disconnecting with the dead, Native American peoples continue to have a relationship with them. From the Native American perspective, death is not a defeat.?There is no central set of rules or beliefs and historically, spiritual teachings were never written down, only passed on from generation to generation. Native American beliefs are deeply rooted in their cultures and histories, and in spirituality. Native American death rituals are widely varied according to different tribal traditions, though they may share some common beliefs.
• Pain and death must be addressed in ways that are mentally and spiritually healing. American healthcare tends to first zero-in on a person’s medical condition and physical symptoms at the onset of care. Research is suggesting that many rural and indigenous people would benefit from having their spiritual and mental health tended to before introducing the technical or clinical aspect of care. In hospice, when a patient is admitted, a nurse is likely the first person someone will see.?However, findings indicate that for some individuals it may be more meaningful to schedule a first visit with a chaplain or spiritual care counselor who accompanies a nurse.
• Non-tribal medical professionals need help navigating language barriers, cultural beliefs around discussing death, appropriate behaviors regarding home visits and touch, and community presence in the home where family and friends are part of the care team.
• There are a number of practical barriers to care including a lack of knowledge regarding the services that are available, a lack of insurance, and difficulty with transportation.

Although California’s Native American population fell dramatically, from 150,000 to 30,000 in the middle decades of the 19th?century, it has since rebounded.?California now has the largest Native population in the United States with approximately 723,000 Native Americans, including many who belong to the State’s 110 Federally recognized tribes.

The Life Transitions Project aims to create clarity and understanding around cultural, economic, social and other critical barriers to end-of-life and palliative care services. The next phase of work will include exploring potential solutions to overcome barriers and building community partnerships that will help combat historic disparities. Additional work will also be done to learn more about the specific needs of target communities.

Many rural patients living with a life-limiting illness continue to suffer from untreated or undertreated pain, stress and symptoms that could be relieved by better access to palliative care. Only 22 of California’s 58 counties have a community-based palliative care program. A planned outcome of the Life Transitions Project is to develop a model that can be replicated across the five counties served by YoloCares. According to Stephanie Baxter, director of patient care, “This work reflects the agency’s commitment to developing culturally competent clinical practices.”